Layla’s story is one of layers, as she describes it. There is loneliness, isolation, lack of community, and entrapment by a system designed to help. We explore the confluence of power and control, being a person with disability, a wife, and a service user. While Layla shares the impacts of having an abusive partner, the focus on this throughout the interview is small in relation to her treatment within systems and the workplace. Layla welcomes me into her modern apartment, burgeoning with plants both inside and on the balcony. She offers me a coffee, then excuses herself as her service coordinator is calling. What strikes me is the demeanour with which she speaks to her – she is so polite and grateful for the support. She finishes the call by telling her she is the best one she has ever had. After hanging up, she tells me the coordinator will be moving on. Another one bites the dust, unfortunately for Layla. On the cusp of her fiftieth year, Layla rents by herself near the city in Victoria. She part-owns a property interstate but is supposed to be getting off the official mortgage; ‘supposedly. If that ever happens’. Like many other women in this study, Layla’s experience of disability is multidimensional. She has neurological and physical impairment which impact her daily functioning. ‘Day to day I'm like finding workwise. Yeah. I, I can't do the two things at once… So I'm finding it now, like trying to think and speak at the same time. I find that quite difficult and I'll find my processes will slow down a bit’. This is difficult to navigate in the workplace as she does not want to disclose too much information about disability, but also needs things to be communicated slowly and written down: ‘it's like, “I've told you that” and I'm like, it gets embarrassing when I don't remember.’ Due to fear of stigma and having experienced disability discrimination in previous workplaces, Layla is selective about the diagnoses she chooses to disclose to her employer. ‘I'm quite capable and I'm doing a great job and I'm good at what I do. But I also know that if they knew everything about me, that suddenly they would look at me in a whole different way’. This stops Layla from feeling she can be her authentic self at work; she feels the need to mask aspects of disability. ‘I don't want to disclose everything to them. I've disclosed my Elhers Danlos [syndrome], but I don't want to disclose the Functional Neurological Disorder (FND) because I don't think that's any of their business. And I feel like that they might then discriminate against me if I disclose that to them. Yeah. And it's hard enough, you know, as it is, you know. Yeah. Getting into the workplace with, you know, I want to be not seen as lesser’. Having thyroid cancer in 2013 coincided with an increase in FDN symptoms, which affects cognitive and emotional functioning, and can be triggered by physical or emotional traumatic events. At the same time, Layla experienced a drop-off in support from then husband, Craig. Layla notes this also exacerbated FND symptoms: ‘it just went “bang” really, came out quite strongly’. She had to manage domestic life and her health largely on her own. ‘I went through a lot of trauma with that and confusion’.
Layla highlights her experience of her ex-husband’s use of power and control, as well as the wider context which created barriers to her leaving and moving on in the aftermath of DFV. This included having to leave her church, which had offered community but had kept her isolated from the wider world. ‘I’ve only been around people in the church I was in, and now I’m thrown out here into this big world to navigating it’. Layla had started to make connections in her community before she was forced to move states. Building relationships takes an enormous amount of energy, as Layla explains. The prospect of developing new networks where she is now is daunting: ‘…it's like all my energy goes to surviving and I, I want to get to these groups and I want to connect with people, but by the time it gets to that, it's like, where's my energy to do that’. The experience of DFV has made it hard to trust others and develop connections. Layla notes there are groups and services available to bridge this gap, but ‘it’s hard to get yourself out of this place, yeah, of lonely. And when you add [the] layer of disability, that’s just another layer, another barrier’. This feeling is represented through Layla’s photo: ‘so I feel like I’m here, like a little bit forgotten, a little bit left out, like lonely and discarded’. The description of isolation is palpable. And it is hard to parse, because my experience of Layla both in our initial interactions and in the interview is warm and friendly. She is light, bubbly, she seems kind and thoughtful. But isolation is not often a result of the opposite of these things. It is rarely a product of hurt or hostility; often, it is the outcome of broader social factors, poverty, social exclusion, lack of access to support to allow those interactions in the first place. ‘Cause it's hard to develop connections and to trust after your experiences of domestic violence, but also that the places that you can go, like the services and groups are not catered towards your needs’. How many of our daily interactions, which give us brief moments of connection, are the talk in the hallway or lunchroom at work? Are the friendships sprung out of the activities we do in our spare time? Are activities which may preclude people with disability who cannot participate independently? In this way, the presence of connection is a privilege. Another focal area for Layla is the experience of poverty, though also like other participants, she does not use the word. Rather, she highlights example after example of the barriers to accessing funding and support; ‘I hate the system, but I need the system’. She notes that she cannot afford to pay the $200 a month needed for vital medications, and there is limited funding available through Centrelink and she does not meet some of the eligibility requirements for support with this. She works more to cover these additional costs and is therefore penalised by a reduction in her payments. The system constantly penalises certain personal choices and therefore, limits agency to make decisions about one’s own life. This is also apparent in the stipulation of reporting intimate partner relationships to Centrelink. ‘…there's things on there that say if, if I enter into a relationship, then I will lose my disability support pension. So, it's basically saying I can't have a relationship like normal people.’ This highlights how situations of vulnerability are manufactured for women with disability, as financial interdependence between couples is expected, according to the logic of the policy, effectively discouraging financial independence in relationships. This is something Layla is considering in relation to her new relationship. ‘So if, you know, things would go further, you know, then it's like suddenly you are like, you have to say, “well, hey babe <laugh> you now have to support me.”’
The availability of good, enduring, and accessible support is crucial, but it is not easy to find. ‘I feel more alone because of my differences. And so, finding that support and someone to sit alongside me, um, I find very difficult.’ Layla would like to see a system which allows for more individualised support, but she acknowledges the work of creating change is not prioritised: ‘because it's complex, because it involves funding and maybe, you know, it involves multiple layers of funding.’ While she had positive experiences of accessing support in her previous state, she has noticed this has become more difficult since moving. She has attended group counselling there and noted the service continues to follow up with her after she moved. However, in Victoria, it has taken over six months of ‘pestering’ to get an appointment. ‘It would really help have to have someone sitting alongside you. Yeah. Yep. It would take away that feeling of isolation, like what I talked about with having that person on the phone. Just that person that talks to you and makes you feel connected and says, “Hey, you know, I've talked to this person and I've got this organized”… just that person that regularly connects with you. A one person would be, yeah make a world of difference.’ Layla believes there is a world of potential inside women with disability, she explains through the image of a lily caged behind wire. ‘…our beautiful lives and we've got so much to offer, you know, the world. But we are boxed in and trapped by this system that, that prevents us, like puts barriers around us and prevents us from accessing things and achieving things that we should be able to achieve.’ Despite low expectations and limited support, Layla is able to get by with a healthy dose of humour. Sometimes ‘the emotions are so big’ the only way through is humour, and dark humour. She’s also learning that it is okay to cry, she says with a laugh.
She is edging her way towards healing. She has started on a new medication which has alleviated her constant migraines, which happened to also stop her myonic jerks; ‘that’s a good bonus <laugh>’. She is accessing counselling and physio which has helped her ‘immensely’. She has found a place to live amidst a rental crisis, which is walking distance from most things Layla needs. Importantly, she’s made a few local friends and is starting to feel less isolated. However, with the move and starting her new job, it can sometimes feel like she is just surviving: ‘it's just been work, work, work, work, work and study, study, study, study, study and survive… so I'm basically on survival mode’. I get the sense this is not eased with the support of those who are put there to help Layla. They may even be making it harder.
%402x.svg){kind=icon}
